Preparing For Transplant

With my boyfriend's transplant being next week (Aug 14), is there anything we need to know to make this whole process easier? I would appreciate some insight from those who have undergone transplant.

Thank You,

JerseyGyrl

Hi JerseyGyrl. I had transplant 10-½ months ago, from my perspective one of the most important things to make this easier on him is to chew ice chips constantly during the high-dose melphalan infusions that will precede transplant by a day or two. He should start chewing the ice about 30 minutes before the melphalan infusion starts, all through the infusion, and for another 30 minutes after it finishes. I did this and had absolutely none of the sometimes terrible mouth sores that can plague patients who go through this. I'd read to start chewing the ice at least 15 minutes before and to continue at least 15 minutes after, but wanted to be on the safe side so I doubled the time to 30 minutes on each end. And it worked! The reasoning behind this is that the cold constricts the blood vessels in the mouth, and so they are less prone to damage. I believe there are several hospitals that recommend this as part of their protocol now, but don't take any chances - let them know in advance that he'll need ice chips and plenty of them to suck on & chew, and then have Plan B so you can quickly get him big cups of ice chips (like from a soda machine) if they don't have it ready for him.

The other thing I'd recommend is to have a variety of things to help him combat boredom in the days and weeks that follow transplant, as I assume he'll be in some sort of air-locked isolation room until his leukocytes and neutrofils increase to a certain level. Books, computer, DVDs, whatever. How long do they expect he'll be hospitalized? Where I was treated (in The Netherlands), they keep SCT patients in air-locked rooms for on average 3-4 weeks until blood values have recovered. That has the potential to be mind-numbing!

I also really limited visitors to just my husband until blood values were out of the "red zone", to cut down on risk of infection. Hospital regs dictated that visitors wash & disinfect hands, remove rings and watches (which can carry bacteria) before entering my room, and very limited physical contact. For the first 10 days after transplant, I used a new toothbrush every day, and did anti-bacterial mouth washes after every meal and before bed. After I was released, constant hand-washing was the order of the day. I was also advised to limit visitors, and told while I could venture outside for walks if I felt up to it, I should avoid contact with others, and not go indoors anywhere except my home (and to give hands a really thorough washing after I'd been outside). So - no shopping, not even for groceries, until blood values reached the next level. I followed their rules and didn't have a single infection. 7 months after transplant, I was back to full strength and my normal routine, which includes quite a lot of international travel for work. In fact 7-½ months after transplant, we celebrated my recovery by walking the last 115 km (about 75 miles) of the Camino de Santiago pilgrimage route in Spain, covering that distance in 5 days, and I felt fine. So tell him to follow all the rules and precautions his medical team give him, eat a healthy diet and drink lots of water (even when he doesn't feel like it - and trust me, despite the anti-emetics he'll be given, if he's like most people he'll have at least a few days of not feeling like eating and throwing up much of what he does force himself to eat), and it'll be behind him before he knows it! Honestly, it was not nearly as bad or challenging as I'd prepared myself for, the SCT teams are pretty good at controlling nausea and it truly did not seem like a big deal for me. I'll say a prayer that it goes as easily for him. (and for you - I believe this is in many ways harder on the loved ones than on the patient). God bless.

Hi Tammy, Thank you so much for sharing your experience of SCT with me. I'm happy you mentioned the ice chips. I know this is very important. I like and agree with your idea to double it to 30 minutes on each end. He will definitely be doing this!

He will only be kept in the hospital for 2 and a half days. The Melphalan will last 2 days, then he will receive the stem cells. Once the stem cells have been administered, he will be discharged from the hospital and sent home. He will have to return to the hospital daily for at least 2 weeks for monitoring etc. He has some concern about that (as do I ). I've told him, if he isn't feeling up to this not to try to be Superman but, to get on the phone and tell them he can't do it. I would imagine, if that be the case, they would admit him to the hospital.

Due to any risk of infection, there will be very limited physical contact with anyone. I think your idea about using a new toothbrush every day is great! Hadn't thought of it but, will definitely be doing it! (Thank you!!). He did receive anti-bacterial mouth wash from his Dr.'s office and as you did, he will use that after every meal and before bed. Will be sure he is well stocked with anti-bacterial soap and hand sanitizer. When he feels up to it, thought he might sit out on the patio but, will make sure the chair he sits on is wiped down with disinfectant and that he also wears a mask.

Thank you again Tammy for sharing. Your prayers mean a lot. He has a lot of prayer and a lot of love.

God Bless You,

Kim (JerseyGyrl)

Hi Kim, Where is he being treated? Maybe they are just overly cautious here in Holland (I'm American BTW - we moved here for a few years for work and I got my diagnosis during this period) but they keep you in the hospital until your numbers hit the magic threshold. Also, a lot of foods were not permitted to eat, make sure you ask the medical staff about that; I assume they'll give him a booklet or brochure with all the do's and don'ts. I'm trying to remember what was restricted but it's sort of a blur (the food was really pretty bland, I think I've blocked it from memory). For sure, everything had to be really cooked through! No bleu cheese (I guess because of the mold). Eggs only hard-boiled, and very well cooked through. No alcohol. No sushi - for months!

Will he have someone with him 24/7 for the first days or weeks, to prepare meals, do laundry, clean the house? I was told when they let me go home not to do any vacuuming and to even leave the room while someone else did it - apparently concerns about the particles that are emitted. I was also told to be VERY careful of burns, they said don't do any ironing, for instance. So he probably shouldn't be cooking for himself, at least not at the start. Also - meals should be consumed immediately after preparation, don't let it sit around for half an hour before he eats it, and no take-out or delivery from restaurants.

I'll let you know if I think of anything else. Assume he'll be on powerful antibiotics, also probably anti-virals? One thing about the ice chips - I don't know if everyone has this reaction, but I was very nauseous after the first day of melphalan, to the point where for the 2nd day of infusion, it was really hard even to chew ice. In fact, I'd chew some and then vomit it up. But I'd make myself immediately chew some more. It was hard, but I'm glad I did it because I know the mouth can be a real problem for some people. So stock up on ice chips for melphalan days! And toothbrushes with soft bristles (in case his mouth is tender) so he can start with a fresh, sterile one each morning. They actually gave a fresh toothbrush to me each day at the hospital where I was treated, and it made perfect sense.


JerseyGyrl said:

Hi Tammy, Thank you so much for sharing your experience of SCT with me. I'm happy you mentioned the ice chips. I know this is very important. I like and agree with your idea to double it to 30 minutes on each end. He will definitely be doing this!

He will only be kept in the hospital for 2 and a half days. The Melphalan will last 2 days, then he will receive the stem cells. Once the stem cells have been administered, he will be discharged from the hospital and sent home. He will have to return to the hospital daily for at least 2 weeks for monitoring etc. He has some concern about that (as do I ). I've told him, if he isn't feeling up to this not to try to be Superman but, to get on the phone and tell them he can't do it. I would imagine, if that be the case, they would admit him to the hospital.

Due to any risk of infection, there will be very limited physical contact with anyone. I think your idea about using a new toothbrush every day is great! Hadn't thought of it but, will definitely be doing it! (Thank you!!). He did receive anti-bacterial mouth wash from his Dr.'s office and as you did, he will use that after every meal and before bed. Will be sure he is well stocked with anti-bacterial soap and hand sanitizer. When he feels up to it, thought he might sit out on the patio but, will make sure the chair he sits on is wiped down with disinfectant and that he also wears a mask.

Thank you again Tammy for sharing. Your prayers mean a lot. He has a lot of prayer and a lot of love.

God Bless You,

Kim (JerseyGyrl)

Hi Tammy, To my understanding, out-patient SCT is something that has become common here in the US. My personal feeling is that it has a lot to do with insurance. They also feel the patient is at less risk for germs at home than they are in a hospital environment. That being said, every precaution is being taken to prepare for this at home. He has been given lots of instructions by his Dr. ( who is a myeloma specialist in western Pennsylvania ), regarding hand-washing, limited physical contact with others and restricted foods etc.

Fortunately, he has 24/7 caregivers to take him back & forth to the hospital daily for monitoring etc., as well as to prepare meals, grocery shop and do the housekeeping.

We will certainly be heeding all your advice Tammy. Thank you for sharing it with us. We greatly appreciate it.

God Bless You,

Kim

Kim, First of all, how is your boyfriend doing??? I've been thinking of you both! Did he chew ice, and is his mouth ok so far? Where in western PA? I'm from Johnstown (small world, eh?)

A couple more things I remember from my SCT last year:

Tell people not to send flowers - they can carry bacteria. And he should not handle any houseplants because the soil can transmit certain bacteria - stay away from them for the next month or two and let others water them.

If he has air-conditioning and is likely to use it, have the filter checked and probably replaced, as they can also spread bacteria that someone with a healthy immune won't be troubled by, but which could cause him problems.

Toilet should have lid closed and then be flushed TWICE after each use for the first several days. Bathroom should be cleaned daily. Towels changed after each use.

The hospital where I was treated had each SCT patient in a private room with it's own HEPA air filtering system and air-lock ante-chamber where everyone entering had to disinfect before coming in. The SCT ward itself also had air-lock entrance and separate air filtering system from the rest of the hospital, to minimize risk of cross-infection. I felt a wee bit like a bubble girl for those 3 weeks, but no infection made it worth it. Tell him as anti-social as it may seem, when friends & family want to come and visit, urge them to wait a bit. And absolutely NO visits from anyone who's had so much as a sniffle, or been in contact with someone who has!

Hi Tammy, I am very happy to report so far everything is going very well. He received Melphalan both days before the transplant. He chewed ice before, during and after and his mouth is free of any problems so far.

It sure is a small world, he's in the Pittsburgh area.

He was released after the stem cells were administered and has been making daily trips to the hospital for monitoring. So far this has been going well. He is able to walk from the parking area into the hospital. Call me crazy but, I attribute his doing so well on the diet he's been following since he was diagnosed (anti-inflammatory) and taking a probiotic. I believe the stronger you go into a serious process like transplant, the stronger you'll come out of it. I just pray daily it continues and this is a complete success.

Thank you again for all your advice and prayers. It is greatly appreciated.

God Bless,

Kim

Hallelujah! SO happy to hear that he’s doing well and handling it all with aplomb! And you are so right, going into any major medical procedure as strong and as healthy as possible increases your chances of a good outcome and minimises side effects. Very pleased for you both, and well done to him! Blessings, and keep up the good work!

I'm very glad to hear your boyfriend is doing well, Jerseygyrl.

Thanks so much Dancermom! Continuing to pray.

Glad to hear boyfriend is doing well. I just left you a message in the chat room. I am in remission and doing well after a stem cell in July.
I am dreading having a bone marrow biopsy October 30, bit that is part of the procedure.
Bookworm